Diagnosis!

Diagnosis! So, the world-renowned neuro-pathologist has determined that the inflammation in PenDell’s brain is being caused by something called Primary Angiitis of the central nervous system. It is a rare form of vasculitis. Apparently only two in a million people get it (I know, we all thought he was one in a million)! The treatment […]

… and he is awake!

… and he is awake! So, as I mentioned, PenDell was started on steroids last Friday. Steroids have some very unfortunate side effects, such as it acts like he dropped speed so he can’t sleep much and gets anxious. The GOOD news is that he is waking up a bit from the brain fog that […]

So many days have passed!

So many days have passed! Yikes! I am not sure how the days go by without me noticing! My beloved PenDell still lies in a semi-conscious state, trapped inside his inflamed brain. I feel him, I commune with him, I wrap him in all of our love, I keep him safe. We are blessed to […]

… and wait!

… and wait! So, really good news is that PenDell was awake for a couple of hours yesterday and has been awake for stretches of time today. I have seen all of the doctors and they are telling me that it is still too early to know anything from the biopsy but they are all […]

Now We Wait

Now we wait… I just left PenDell in ICU. He is awake, not as alert as this morning but he knew Evan, Erin and me. I spent a couple of hours with him before coming down to “our room” now to sleep. The surgeon said that all went well. He felt that we have a […]

Brain Biopsy

Brain Biopsy From last night.. I am sitting here on the eve of PenDell’s brain biopsy. I am looking out of my hospital, tiny home window at the powerful, amazing, clear, unimposing but mighty, full moon. I am listening to a recording of PenDell singing “How Shall We Give Thee Glory.”  One of the qualities […]

How Shall We Give Thee Glory

How Shall We Give Thee Glory… I am sitting here as PenDell sleeps… and sleeps. I am listening to him breathe. I am also listening to a recording of him singing. His beautiful, powerful, substance-shaping voice is filling my heart. As I listen, I am being taken through years of memories – wonderful memories of […]

Ups and Downs and a Birthday

Ups and Downs and a Birthday So, PenDell slept for five days… then he woke up. He stayed awake for a day… and a night… and a day. What would help at this point is to be able to find what is causing the inflammation so that it can be treated appropriately. The only thing […]

Each Day Falls into the Next…

Each Day Falls into the Next… I have created a tiny morning ritual. There is a coffee shop in the main lobby of the hospital that serves bulletproof coffee – my coffee of choice. I order a dark roast pour-over with brain octane and butter. The pour-over takes 5-8 minutes so during that time, I […]

So much progress!

So much progress! Today was a GOOD day! PenDell’s sister Sharon came in from Dallas yesterday and is here until Monday. Erin was able to come down today for several hours. PenDell finished all meds, is no longer on tube feeding, held some of his own weight during transfer to the recliner and was awake […]